Help with Dandy Walker

Hi I am 22 weeks and they diagnosed our baby with dandy walker. They can’t tell us the severity and we are very worried because we don’t know what to expect. We had an amnio done and it came back normal so the genes are fine. But the doctor still informs us that things can still be wrong. We were givin the option to abort but I refused because I keep thinking what if. I am so confused and if anyone has any light to shed on the situation that would be so helpful.

please know I don’t wish to get your hopes up but five years ago I was pregnant with my second son and at 7 1/2 months they sent me to see a genticist who took 80 or so ultra sound pics and she diagnosed him with partial dandy walker, after my regular doctor became concerned about my last ultrasound and an and bnnormal spot . I was scared for me it was to late to turn back. When I had him he was taken to N.I.c.u immediately they said he had to stay for a week to run tests and see what was what so to speak. AFter three days I was allowed to bring him home and they told me there was nothing wrong with him. They said after all their tests there was nothing wrong. I’m still now concerned but so for I’ve seen no reason to further it. He is happy n healthy no disabilities there appears to be nothing wrong with him. I dont understand the diagnosis then to say he’s fine but thats what happened to me sincerely Elizabeth Clark

Hi. I’m at 19 weeks. Our son was diagnosed with Dandy Walker through ultrasound and MRI. They say he has excess fluid in his enlarged fourth ventricle, but no cyst and that they were able to visualize an underdeveloped vermis. We won’t get the amnio results for a few weeks but otherwise they say that the ultrasounds and MRI showed that all other structures were intact and looked good. The radiologist also suggested that we may want to do a fetal echocardiogram b/c the heart is one of the the other major body parts affected by DW malformations (however no problems were seen with it on scans). Like you I’m totally overwhelmed. A big part of my stress is coming from the fact that I don’t want to abort but my husband says he doesn’t want this baby. Part of me knows that all this is new to him and it may just take time. He wanted the baby before the DW came up. Because the outcome is so variable in terms of how severe the disabilities may be and the degree of “additional” care the baby may need I just don’t know what to tell him or what to think. Obviously, there are times when all of it seems overwhelming and I think about terminating but for the other 99% of the time I can’t imagine it. I know this doesn’t give you more info but I just wanted you to know that you aren’t alone. It really seems like there is nothing a person can do other than decide to either go forward or not b/c there’s nothing the medical community can do or help with either. Since you’ve decided to go forward, I wish you the best outcome possible.

My wife and I were told the same thing. Except they cant find a vermis at all. There doesent seem to be any other complications, but it is very difficult to deal with when nobody has any answers. I will say this though, I am a high school counselor and one of our better basketball players has dandy walker. You would never guess he had anything. We are going to trust God and do the best we can to raise our daughter. We also thought about termination of the pregnancy, however our faith held us accountable. Something that was hard to read, but true, was Psalms 139 in the Bible. It is a very personal choice, but I wanted to encourage you to follow through and do the best you can. We are scared too.

Eddie Saade
Lansing, MI.

My granddaughter, who is now 8 months old, was diagnosed 5 days before she was born on her 35 week ultra sound. I know how scared you all are, how frustrating it is that no one can give you definiative answers. DWS and its varients are pretty much a medical mystery, there isn’t much research that has been done on it. The best I can do is tell you our experience and pray that yours are similar.

When Tess was born she was in the NICU for 5 days, she also has hydrocephalus, which about 70% of DW patients have. In some cases hydro requires a shunt to drain the excess fluid and pressure but her’s is not that advanced at the moment. 1 in 500 babies are born with hydro and many have shunts and do quite well with them.

Tess is slightly developmentally delayed, she prefers her right side to her left and tends to do things first on the right ie rolling over ect. She is very social, babbles, coos, interacts with people, smiles and giggles all the time! She gets physical and occupational therapy once a week and eventually catches on to things, it just takes her a little longer than most babies. Emotionaly her development is right on target, the only area she is delayed in is motor skills.

I know when you first hear your baby has this its so easy to think the worst and be scared to death but please know that in many cases things aren’t near as bad as the picture some Dr.s paint. There is an advocacy group called the dandy walker alliance, started by Dan Cole, who’s son was born with DW. He has done all sorts of work with congress to advocate for research. There is currently a resolution HR163 that specifically calls for more information and research into DW. If you google Dandy Walker Alliance there is a wealth of information there as well as info about a documentary that is being made, actually almost done to be released in later this month that is called Dandy Kids!

Please feel free to ask all the questions that you have, talking to others who are going through the same thing can be a great help! Good luck and God Bless!

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I am 22 weeks pregnant, we were told that our baby girl has a partial dandy walker malformation about 2 weeks ago. She has hydrocephalus also. I can’t remember the technical name, but the part of the brain that generates the spinal fluid should be at 10 mm., hers is at 14 mm. I go for another ultrasound on Feb. 6th. The dandy walker malformation doesn’t go all the way through her cerabellum, so it’s partial. So far there are no other abnormalities anywhere, which is good. We decided against an amnio, it wouldn’t change anything. Whatever the outcome, this is Gods blessing and we’ll take whatever He trusts us with. Psalm 139 was one of the first things I read after we found out.When we have her dedicated in church after she’s born. I think I’ll make verse 16 her life verse. God is good and makes no mistakes.He entrusts special children to special parents.He won’t give more than we can handle and gives us the grace to handle what we think we can’t. Cast your cares on the Lord and lean not on your own understanding! I am just learning about DWS, and I plan to learn as much as I can.But all things are in Gods hands, He’s big enough to handle all things!

Hi :slight_smile: I’m from Portugal and I’m foster family of a girl with dandy-walker… She was born with hidrocephally and she needed a shunt to drain the CRL…6 months later the first surgery she needed to do it again because the shunt wasn´t ok… The doctor didnt’t give us a good hope…
Now she is 6 years old, she’s still in the foster house but she is with us by the weekends, holydays and so on… she’s a very happy girl, if you don’t know she has DW you woudn’t notive anithing wrong… althoug she has abnormal development… she looks like 4… she has motor problems, she prefers her left side and has low skills on her right side… cognitive development is also about 4… but she is increasing! sometimes it’s dificult to deal with her because she has lack of attention… she just can’t be “with you”, paying attention to what you’re saying more than a minute… but we never gave up on her!
When she was born doctors told us the worst… now she is not less “normal” than lots of “normal” kids!

hi Elmo! I have a daughter that was diagnosed with Dandy Walker at 6 months old. Her’s wasn’t caught in a ultrasound. Iwas in great shock when she was diagnosed. Now she is almost 3 years old, and the happiest baby ever. I want you not to worry, my daughter is developmentally delayed and is around 8 months old mentally. She has seizures during the day and takes meds for it. Early Intervention has been a lot of help with her. If you have any more questions for me just ask! Message me on my profile.

I’m 52 got diagnosed with Dandy Walker at 38 I was born with a large fossa cyst in the left quadrant I just had delays in walking started around 4 my eyes were messed up was all I had surgery to correct vision saw 20/20 since5.walk-in talkin seeing great ever since it doesn’t have to be a real problem I didn’t have a shunt or brain surgeory didn’t know I had anything until I was wheelchairs were needed

Thank you so much for sharing! I am a expecting mother (29wks) who’s baby has been diagnosed with dw my boyfriend and I are excited about the birth of our son and hopeful that he lives a good life. So far no fluid or anything out of the norm except for the cyst in the cerebellum. Could u please give more detail on your granddaughter if you don’t mind. For example she already at 8months is able and needs to have physical and occupational therapy? What does that intel with a baby? Also what kind of motor skills does she struggle with? We r so curious of your story and would love to chat if possible bc Tess is just far enough ahead of our baby for us to learn